"some days I feel like Sh*t.. some days I wanna quit, and just be normal for a bit"

So it has been a while since I updated.  Sorry for that.  Thank you for the new people who are reading from twitter!  I know I also have requests for a video update. I will soon I promise.  I just haven't had the heart to do one lately. I will though!

Its been a roller coaster of emotions and  I had a breakdown today.  The GHB does work its not super noticeable.. but it does work.  Unfortunately it is not without serious side effects.  I have become increasingly depressed and riddled with anxiety.  Even with increasing the anti-depressants.  Also.. I have significant lapses in memory right after taking doses.  That is not only sad but also alarming.
Theres been a few days things have happened and just a few hours later I have completely forgotten them.  Not small things either.   Also the deep muscle spasms have been worse lately.  Sometimes they wake me during the night,  I need my sleep so this agitates me.

I feel really Defeated today, this was really promising..  and it breaks my heart to have yet another failed drug.  I will see the doctor on the 6th of to discuss what to do next.  I really want to push the ethonal Pill I think its my best option.  If not.. well I may give up treatments all together.  Maybe I am trying to change something that just isn't meant to happen?  I can instead just focus on pain relief or some junk.


BLEEEHHHHHH Today has been rough and its really done a number on my hope and my heart.
But I am still alive, I still have people that love me... and I am sure I will get my fight back.
Just.. not today.

It has been a while, I am a slacker.

I suck.  I have not been keeping up on my blog, but mostly I have had nothing interesting to report. However since February 29th is rare disease day I figured I needed to get a post up before then.  I have for the most part been storm free for about 2 months? My pain levels have been manageable.  Tonight I hurt more than usual but such is dystonia. Lets call it an 8, it has certainly been worse but I woke up aching really bad this morning.  

The Xyrem (GHB) came in the mail last week.

I have gone through a roller coaster of emotions because its exciting and terrifying all at once.  I am On anti-depressants that cannot be taken at the same time as the Xyrem.  SO... that is the most terrifying part.  Mood stabilizers have been a life saver for me for the past 7 years.  I worry.. And Of course when I worry my OCD kicks in and then I can think of NOTHING but disaster :\  Heh.  Last Friday the nurse called and said that we would probably start the trial on the doctors hospital days (Tuesdays and Fridays) so she thought we would be starting this Friday.  The nurse I was speaking to was the one I always talk to but she said she wouldn't be in this week that I needed to call is other nurse if I didn't hear something on Monday, and I of course did not.  So I called today to find out what the plan was and the current nurse looked on his schedule and I am not in the hospital schedule for Friday.  She didn't even have any notes about the drug trial.  I was really annoyed this afternoon because it is these moments when I feel like because I am one of so few that the doctors really just don't follow close enough attention because they don't know what to do.  It feels like really bad practice to not be following the patient you are putting through a drug trial more closely and following up with her when she is starting and have some details at least.  The drug companys nurse was the one that told me I would have to stop my anti depressant because of interaction.  My doctor and nurse were completely Unaware of it until I brought it up.  So again I state that terrified part.. this is why.  I know I am a guinea pig... but sometimes it would really be nice if they didn't treat me like one.  Maybe if they at least pretended to know what was going on I would feel a little more comfortable.  I have done a TON of research on my own, google is amazing.  So I kind of know what to expect, but it is all a guessing game.  

Thank you 2016!!

Okay so 2015 was NOT a good year for me on so many levels.

2016 didnt start off with a bang either but It is slowly making a turn around, Today was a big thing!!!

My appeal for the Xyrem GOT APPROVED!! the co pay isn't too bad. but between channel 5 and my go fund me and just saving money I have about 1000 For medical stuff so I wont have to worry.     I can now start the drug trial. This is huge as is can potentially stop the Myoclonic jerking or at least slow it down. I haven't has a storm since the start Of all the benzodizapines and I am getting used to the side effects of them.

So here is to crossing our fingers to new beginnings!! :)